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RESEARCH WEEKLY: August Research Roundup, National Grief Awareness Day
By Shanti Silver
(August 30, 2023) Research Roundup is a monthly public service of the Office of Research and Public Affairs. Each edition describes a striking new data point about severe mental illness and summarizes recently published research reports or developments.
This month’s roundup is in honor of National Grief Awareness Day and highlights experiences of grief among people with SMI and their relatives.
Datapoint of the month
40% of relatives of people with chronic psychotic disorders experience complicated grief
Complicated grief is a “prolonged, unrelenting grief” that occurs after the loss of a loved one, typically characterized by intense emotional pain, deep longing for the person who is lost, hyper-fixation on circumstances surrounding the loss, and avoidance of things that trigger memories of the person who was lost. While grief is typically only accepted as a response to death, it can also occur after the onset of a psychotic disorder. In a recent study from “Community Mental Health Journal,” 87% of people who had a close relative with a chronic psychotic disorder reported that they experienced loss because of the changes to their loved one’s personality and behavior. More than 60% of relatives also reported feelings of self-blame and experiencing the loss as “a shocking ongoing trauma.” Overall, 40% of relatives met the threshold for complicated grief.
The authors note that despite the high prevalence of grief in this population, diagnostic manuals like the Diagnostic and Statistical Manual of Mental Disorders do not acknowledge that complicated grief can occur after a loved one experiences a significant psychological change. However, it is important to raise awareness about recognizing and treating complicated grief among family members of people with psychotic disorders.
Rachamim, L., Nacasch, N., & Sinay, I. (2022). Complicated Grief, Depression, Health and Attachment Style in First Degree Relatives of Individuals with a Chronic Psychotic Disorders. Community Mental Health Journal, 58.
Research of the month
Diverse experiences of loss among people with psychosis
In a recent article from “Psychiatry,” clinicians explored different types of loss experienced by people with psychosis and emphasized the importance of helping people with psychosis to grieve and process their losses in psychotherapy.
The authors identify four types of loss experienced by people with psychosis:
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External losses are losses of school or work-related functioning. The authors provide examples of people who are forced to withdraw from college or who lose jobs due to their psychotic symptoms.
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Interpersonal losses are losses of close relationships, social support, or community. While disorganized behaviors caused by psychosis may cause social isolation in some cases, the authors also recognize the role of “widespread stigma regarding severe mental illness” as a reason why friends and family might distance themselves from a person who has been diagnosed with SMI.
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Loss of symptoms can also be a difficult experience for some people with psychosis. While psychotic symptoms are often terrifying, confusing, and disabling, they can also provide a sense of importance or purpose. The authors provide an example of a woman who felt intense sadness and a lack of interest toward life after her delusions of grandeur decreased.
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Loss of self refers to a loss of personal identity or a loss of trust in one’s mind. For example, someone recovering from psychosis might constantly second guess whether their perceptions and desires are “real” or “psychotic.” This loss of trust in oneself and one’s identity can be destabilizing.
People with psychosis can respond to losses in a variety of ways, such as avoiding or denying the impact of the psychotic episode, internalizing the losses, or making meaning of them. While this article provides guidance for practitioners to help patients with psychosis to process grief and loss, the authors note that there are still many unanswered questions about the impact of grief on people with psychosis. More research is needed to address the shortage of studies about experiences of grief and loss among people who have psychosis.
Ridenour, J. M., et al. (January 2023). Integrating loss and processing grief in psychotherapy of psychosis. Psychiatry.
Parents’ changing perspectives on their child with SMI’s identity
In another recent study, 32 parents of children who have serious mental illness and violent tendencies were interviewed to determine how their understanding of their child changed after the onset of their illness. Some parents described their child as physically present, but psychologically absent. These parents often described that their child as they were before the onset of their illness was “gone” or “lost.” Other parents viewed their children as essentially the same but with new behaviors that they attributed to the illness, not to their child. These parents often described their children’s symptoms as “separate from who they really are.” Many parents in this study also expressed feelings of grief over their relationship with their child and the uncertainty of their child’s future.
The unpredictable nature of serious mental illness and the trauma of watching a child go through cycles of recovery and relapse can make it difficult for parents to cope with loss and can also leave parents “frozen in their grief,” according to the authors. In response to their findings, the authors recommend that policy makers and healthcare providers work to decrease barriers to services for caregivers, ensure caregivers can contribute to their child’s care team, and provide people with education about managing caregiver-related stress.
Sporer, K., & Toller, P. W. (January 2023). “She’s not the child we had”: How parents reconstruct their child’s identity to include violent and with mental illness. Journal of Family Trauma, Child Custody & Child Development.
When a loved one has SMI, they may seem “gone but not gone.” Family members experience ambiguous loss—a type of loss that is unrivaled in its ability to cause confusion and grief because of the lack of clarity. Staff at Treatment Advocacy Center are developing family education materials about ambiguous loss. Watch for information and training opportunities in the upcoming year.
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